Showing posts with label legal. Show all posts
Showing posts with label legal. Show all posts

Tuesday, June 03, 2014

EmergingTechs Nanotechnology, Synthetic Biology, and Geoengineering in the Governance Eye

The second annual Governance of Emerging Technologies conference held in Phoenix AZ May 27-29, 2014 discussed a variety of governance (regulation), legal, and ethical aspects of three areas of emerging technology: nanotechnology, synthetic biology, and geoengineering (climate management).

The prevailing attitude in nanotechnology is much like that in artificial intelligence, “no new news” and some degree of weariness after having experienced a few hype-bust cycles, coupled with the invisibility frontier. The invisibility frontier is when an exciting emerging technology becomes so pervasive and widely-deployed that it becomes invisible. There are numerous nanotechnology implementations in a range of fields including materials, computing, structures, nanoparticles, and new methods, similar to the way artificial intelligence deployments are also widely in use but ‘invisible’ in fraud detection, ATM machine operation, data management algorithms, and traffic coordination.

Perhaps the biggest moment of clarity was that different groups of people with different value systems, cultures, and ideals are coming together with more frequency than historically to solve problems. The locus of international interaction is no longer primarily geopolitics, but shifting to be much more one of collaboration between smaller groups in specific contexts who are inventing models for sharing knowledge that simultaneously reconfigure and extend it to different perspectives and value systems.

Sunday, August 14, 2011

Scaling citizen health science and ethical review

Many things are needed to scale citizen science from small cohorts on the order of a few individuals to medium and large-sized cohorts. Building trust in online health communities, motivating sustained engagement from study participants, and lower-cost easier-access blood tests are a few things that are needed.

Legal and ethical issues are also a challenge. Independent ethical review is appropriate but the current IRB (Institutional Review Board) requirement for funding and journal publication is a barrier to crowdsourced study growth. In 23andMe's early studies, there was a definitional debate as to whether their research constituted 'human subjects research,' and whether there was a difference in interacting with subjects in-person versus over the internet.

The U.S. HHS (Health and Human Services) definition of 'humans subjects research' is research that "obtains (1) data through intervention or interaction with the individual, or (2) identifiable private information." (45 CFR 46.102(f)) The strict reading is that any research obtained by 'interacting' with a human subject (e.g.; likely all personalized health collaboration community research) would require an IRB for the funding needed to do it at scale.

Acknowledgement: Thank you to Thomas Pickard for providing background research